HARRIS COUNTY - HSA INSIDER
Harris County-Houston Sports Authority: Rugby teams meet to fight ALS
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When the men’s national rugby teams from the USA and Scotland take the pitch at BBVA Compass Stadium June 16, they’ll be battling for more than just an international victory.
They will be raising awareness and funds for what Americans call amyotrophic lateral sclerosis or ALS or Lou Gehrig’s disease and what the UK calls Motor Neurone Disease.
More than 5,000 people each year are diagnosed with the incurable, debilitating neurological disease that has no cure. Gehrig was the first athlete in the U.S. to be diagnosed and bring awareness to the illness, which presents and progresses differently in every patient.
A little over a year ago, the disease struck one of Scotland’s iconic players – Doddie Weir – and he has launched his own foundation to help raise funds. Weir, who retired from the game in 2004, has been able to walk on his own and brought some 67,000 spectators to their feet at Edinburgh’s Murrayfield Staduim last fall when he carried the game ball onto the pitch for a union match between Scotland and New Zealand.
Although he won’t be able to travel to Houston for the game, Weir’s My Name5 Doddie Founation – the 5 incorporates his jersey number in the name – and Houston Methodist Institute’s Neurological ALS Clinic will benefit from the event.
The acclaimed Methodist Clinic’s multi-disciplinary approach has become the gold standard for ALS care. Dr. Stanley H. Appel , the clinic director, was the first to implement the approach where neurologists, pulmonologists, respiratory therapists, speech therapists, occupational therapists, dieticians, social workers and nurses work as a team with patients.
“Dr. Appel saw that this was what was needed to manage this illness,’’ said Methodist ALS Clinic Coordinator Karen Toennis. “Like I tell folks, there is no cure, but we can treat this and we can manage it.’’
O.J. Brigance, a former Rice star linebacker who was on the Baltimore Ravens’ 2001 Super Bowl Championship team, has lived with the disease for 11 years now. Although he is in a wheelchair and relies on a special computer he communicates with by controlling keys with his eyes, Brigance is one of the bright lights in the fight. Not only is he still working for the Ravens as Senior Advisor to Player Engagement, his Brigance Brigade Foundation raises funds and awareness. Brigance was a patient at Methodist for a bit, but is now treated close to home at Johns Hopkins in Baltimore.
He wrote a book with that eye-assisted computer - "Strength of a Champion" – about his journey with ALS and was in Houston two weeks ago to raise awareness at Rice.
Brilliant theoretical scientist and acclaimed Cambridge professor Stephen Hawking was diagnosed with the disease in 1963 and given two years to live. Hawking, who, like Brigance was in a wheelchair and communicated with eye-assisted computer, lived with the disease for 55 years before passing away in March at the age of 76.
“(ALS) patients don’t lose that eye function,’’ said Methodist ALS Clinic coordinator Karen Toennis. ‘’So this is where those computers are such a God send.’’
Other athletes living with the disease include former San Francisco 49er receiver Dwight Clark and former New Orleans Saint safety Steve Gleason.
“They don’t know what causes ALS,’’ Toennis said. “It still has our greatest scientists scratching their heads.’’
The complex disease can take up to a year to diagnose, but events like the June 16 match and foundations are raising money for research – and, they hope, an eventual cure.
There are a few promising projects moving forward including Appel’s study on the effect of immune response.
“He’s trying to work with body’s own immune system to slow the progression,’’ Toennis said.
To donate to ALS research through the rugby match, you can go to https://sportsauthorityfoundation.org/donate.